23 Things You Don’t Understand About My Auto-Immune Child

23 Things You Don’t Understand About My Auto-Immune Child

You think I am overprotective and over-react about my child’s health, but here’s what you don’t know and haven’t seen. I have 4 daughters and I have been through it all with one or all of them. These are experiences, but anyone with a child who is gluten free or has any kind of auto-immune disease (we have 4 auto-immune diseases in our family) has similar experiences they could insert:

1. You haven’t seen my child with little to no energy

My daughter napped 2-3 times a day until she was close to three years old. She often needed a nap as she got older or at least some down time to rest. This was before she was diagnosed with celiac. It’s so hard to know what is normal and what isn’t. It’s almost impossible to get a doctor to listen to you and help figure out what is going on.

Another daughter said to me: “A kid shouldn’t feel like they have been run over by a truck and have no energy.” Then she burst into tears and my heart broke for her. She was 11 years old and just diagnosed with Hashimoto’s. 20% of kids with celiac disease develop auto-immune thyroid disease. (This statistic comes from the conversation I had with The University of Chicago Celiac Disease Center, when I called them to ask questions about Hashimoto’s and celiac disease.)

Overnight my daughter went from being a very talented, energetic gymnast to a child who had a hard time just getting out of bed.

She didn’t give up. She pushed through for 3 more years, even though our doctor said it was too taxing on her body. Her thyroid numbers were never what they were supposed to be, until she retired from gymnastics. She had a lot of pain in her Achilles tendons and pain in her feet. Evidently Achilles Tendonitis often goes along with Hashimotos. She got tired of being tired and having so much pain. You don’t see the ache and pain in my heart for her and how her life has changed.

2. You haven’t heard my child crying because of stomachaches and intestinal pain

My daughter would frequently have stomachaches. After a while it was every day. We had been to the doctor often and it was always the same thing. Keep an eye on her; she seems fine, if it is still going on in a week. . . come back. It is so hard to know what to do. It would seem like it was getting better and then seem worse. We frequently went to the doctor and got little to no answers. This went on for months.

3. You haven’t had a doctor accuse you of causing your child to be malnourished because of her symptoms

My daughter had reflux pretty bad as a baby. Our doctor suggested putting her on some rice formula because it was heavier than breast milk and would be harder for her to throw up. It was working pretty well and I was so relieved; I was exhausted. She wanted to nurse every hour and a half because she was always hungry! However, one weekend we noticed blood in her diaper. We took her to the ER and the doctor accused me of neglect, saying she was malnourished, and that I was not feeding her properly. He told me that with the amount of blood it had to be going on for a long time. Not only that, but she was seriously anemic. On Monday, we went into our pediatrician who apologized for the way I was treated by the ER doctor. He told me to avoid taking a baby to the ER because they really don’t know or understand infants. He assured me I was doing everything right and my daughter was fine, except she was allergic to the formula which was causing the blood. She was anemic because all babies are at 2 months old and then their iron levels come up to normal after 2 months. Since then, I have learned that many formulas including many rice formulas contain gluten!

4. You haven’t had a doctor lecture you about what to feed your child to add more calories to increase her weight

She is so thin but has a bit of a belly due to Mal-nutrition from not being able to absorb proper vitamins and nutrition and being bloated.

These are 2 different daughters. This one is 2 years old and barely weighs 16 pounds. She ate lots of cake (or maybe just a lot of frosting) for her birthday!

All my kids were low weight and most were slow growth. I was forever being lectured about feeding my kids more fat and calories. My question was why? My kids love fruits and vegetables and they eat plenty of that other stuff too. I have always felt that you start good eating habits young, to carry you throughout life. I was told to give her gravy and anything with a lot of calories. My husband’s step-mother was good about helping me to not worry so much about this. (It wouldn’t have mattered what they ate. . . with celiac and digestive issues you don’t absorb like you should and all you end up doing is creating bad eating habits! *My opinion!)

It’s so hard when you have to put your child through blood work! 2 of mine have had to have a lot of blood work done, throughout their lives. I dread having it done but know it is a necessity.

It’s hard to not wonder if you are doing something wrong. Do I have misinformation. . . is my gut wrong. . . will my child be okay. . . will they find a really bad medical problem. . . You wish you could spare them the pain with the blood work. . . You want to make things better, but you can’t.

6. You haven’t struggled to get my child to eat something besides fruit, yogurt and cheese

2 year olds, especially, are picky eaters. Can you imagine being lectured by your doctor that your child needs more calories but they only want to eat fruit, yogurt and cheese. You celebrate when you can get them to eat anything else! (Did you notice that the only thing she was eating, on a regular basis, were gluten free foods?!)

7. You don’t understand what can happen and how miserable it can be if my child gets even a little bit of gluten.

One of my daughter’s passes out randomly for 3 days after getting gluten. It is really scary! Another one of my daughters becomes extremely irritable! When she was younger she would be more disobedient and difficult and mean to her sisters. My oldest daughter felt flu like and generally crappy! Most of them need a bathroom close by. Sometimes there are headaches and brain fog which really make it hard to think clearly. We don’t get gluten very often because we are really careful. We know how horrible it can be!

8. You don’t understand my child’s symptoms and how they are different than when a child without celiac or gluten intolerance has diarrhea, constipation, stomach pains, gastro pains or headaches. How about the orneriness caused by a gluten reaction? That is even harder to understand.

The “feeling off” is much worse for someone with celiac and lasts for 3-5 days. The body continues going through a chain reaction (some doctors say) for 2 months. I have been there and I have seen my children wade through a gluten reaction. It isn’t fun and it is so hard to function when you have so much going on! People really don’t understand it. My daughter that gets really ornery when she gets gluten had an awful experience with roommates not understanding that she was having a hard time because of the gluten. She got gluten when she did S’mores with her roommates. They were touching graham crackers and then reaching into the marshmallow bag and cross contacting the entire bag. I wrote more about those difficulties in this post about College Woes with a Gluten Free Complications. People are less patient when they don’t understand why you are behaving differently.

9. You haven’t seen or studied about the worst case scenario

Since education is key and I am one of those people that needs to understand as much about being diagnosed with celiac, HSP, and Hashimoto’s as possible; I join support groups, read a lot, run a support group, and join Facebook groups which are a lot like forums used to be. I know how bad it can be. I understand that if my child’s system is constantly being challenged by gluten, they run the risk of stunted growth, several types of cancer and other auto-immune diseases and related diseases. They may get some of the other auto-immune diseases (which did happen to my youngest with Hashimoto’s), but I hoped that we could delay it. I frequently worry about what is next. What is the next thing we have to figure out, understand and deal with?

10. You don’t understand the embarrassment of gas because of gluten

A side effect of having gluten is really bad gas and a lot of it. Not pleasant to be around. Not a good house to be in when everyone has eaten the same thing and reacting to it. You especially don’t want to go around other people when your intestines are acting up. The gas is bad and sometimes you aren’t sure if it is just gas or if you should be running to the bathroom. The gurgling noises always give it away.

11. You haven’t been there when my child was rushed to the hospital and no one could figure out what was wrong with her. (Most doctors don’t understand auto-immune issues!)

This may or may not have been a result of undiagnosed celiac disease. Many people who have celiac also deal with other medical conditions. Many of which are caused by delayed diagnosis of celiac. The body doesn’t absorb properly and depending on what your body can or can’t absorb effects it in many ways.

We thought we were going to lose our sweet little 5 year old.

We took her to the doctor at least once a week and sometimes 3 times a week for over a month. I knew there was more going on with her and couldn’t get anyone to listen to me. Our regular pediatrician was very sick with pneumonia during this time and wasn’t seeing patients. My daughter became listless and had weird blood rashes, eventually she began throwing up blood. We went to 3 medical facilities within 12 hours. (2 were hospitals, the first was an after hours clinic; because it was a holiday. At the clinic she was seriously misdiagnosed! She was admitted to one hospital and then transferred to another.) There’s so much more that was going on with her and it was utterly traumatic for all of us. Eventually, she was diagnosed with HSP. While this has no relationship to celiac, that I know of, it has added to the anxiety I feel about all of my children, their health and never wanting to be in that position again. It would have been too easy for our little one to slip away from us! It still makes me so emotional!

12. You don’t understand the long-term consequences

I have always been really short. My kids were all short too. If a child goes gluten free before they stop growing, they can usually catch up and many other problems can be reversed. But, they *must* adhere strictly to a gluten free diet. Otherwise, they will end up being short, just like me. (Not everyone who has celiac is short but many are.) I always wanted healthy kids that were taller than me! (I’m 5’1/2″.) They have all achieved that now.

I believe my health would be better had I been diagnosed sooner.

I think my oldest might be a little taller had she gone gluten free with us, sooner than she did and not cheated once in a while on the diet. I knew she was cheating because she wouldn’t feel good, felt off and like she had the flu. I would confront her and she would admit she had eaten some gluten. Finally, she understood that she was reacting to gluten and she hated that she would go from feeling so good to feeling so yucky! She was in control of how she felt. She was toward the end of her growing years, but she had the biggest growth spurt she ever had at any other time in her life! She made it to 5’2″.

There are so many complications from not complying with the gluten free diet:

Dermatitis Herpetiformis- A skin condition that often accompanies celiac disease. I got it 3 years after being diagnosed with celiac and being strictly gluten free. I got it because my shampoo, conditioner, body wash and hair spray all contained gluten. One of my daughter’s got DH after using some hair products that contain gluten. (Unknown picture source)

***This is just a small list, there are many things that can happen when patients don’t comply with a strict gluten free diet.

13. You don’t understand how hard it is to get some kids to comply with their diet.

Young kids with celiac have a hard time because a lot of kids want to share and will sometimes just put things in other kids mouths. I’ve seen my kids do this as well as others. They go to nursery classes or day care and all kinds of things happen and it can be difficult to keep them gluten free. Kids don’t often wash their hands after eating and this can cause a cross contamination to a gluten free child. Play areas at a fast food place are a celiac child’s parents nightmare! You want your kid to be a kid but they risk getting sick because hands touch everything and then they put their fingers in their mouth.

Older kids have a hard time because they don’t want to be different from their friends.

It breaks my heart when my kids or other celiac kids feel like they are freaks because they can’t eat what everyone else is eating. They often think no one will know that they have cheated and they don’t always put their symptoms together with how they feel later and the fact that they ate gluten. They need help connecting the dots. Educating kids about their disease takes time and they make mistakes along the way. Just because you see a gluten free kid eating something that isn’t gluten free doesn’t mean it is okay; it means that they don’t understand their disease.

Kids don’t want to be different, they want to fit in.

My daughter had a really had time at camp one year when a leader brought everything to a standstill and shined a great big light on my daughter. It was dinner time and instead of just making sure my daughter was first in line, she kept everyone from going through the line until my daughter was done. Everyone stood and watched her get her food; waiting for her so they could get theirs. Incredibly uncomfortable and hard for my sweet 12 year old!

It has helped my kids to talk about and realize that everyone has something, sometime in their life. There are kids with asthma, diabetes, and so many other issues that some of their peers are going through that they don’t know about.

Some kids, especially girls who have always been thin, will eat gluten when they are not supposed to in order to lose weight. They are used to being the really skinny girl, but going gluten free they start to put on weight. They get scared or worried about getting fat and will eat gluten in order to keep thin. (Not everyone with celiac or gluten intolerance loses weight or is thin. The majority of people with celiac are overweight at the time of diagnosis.)

14. You don’t understand my worries

I have been through so much with all of my kids and my own health issues. It’s next to impossible for me to separate it all out.

I want my kid to have regular kid experiences as much as possible and stay healthy. I know this is possible if people who are around my child will work with me.

I worry that you don’t understand, even after I have explained things to you.

I worry that even though you claim to get it. . . you really don’t.

I worry that you’re just telling me what I want to hear. . . That you are just humoring me.

I worry that you think I’m overreacting and being over protective.

I worry that you buy into all of the gluten free fad stuff that is going on and don’t realize that some of that isn’t safe for my child!

I worry that you don’t understand that while oats are often considered gluten free, not all people with celiac can tolerate oats. This is a risk our family has decided to not take!

I worry that my kid will get sick on the field trip, activity or camp because things weren’t handled properly.

I worry that my kid who could have had a great experience and strengthened friendships will have the experience ruined by being sick.

I worry that my kid will be embarrassed by excessive, stinky gas or needing to constantly run to the bathroom.

I worry that my daughter will pass out and get hurt.

I worry that my daughter will be so irritable she will alienate leaders and her peers.

I worry that my child can’t participate because of her diet.

I worry that my child will be left out because there is nothing for her to eat.

I worry that while there were meal items for my child to eat, she won’t get to have any dessert.

I worry that if I don’t help her and make sure something is provided for her she will be expected to just suck it up and get used to being left out.

I worry that if you provide something for her she will not like it and I know it can be expensive.

I worry about asking you to make sure there is something for my child.

I worry about stepping on toes because I send something for my child so they don’t feel left out.

I worry about making my child feel different because she is bringing her own food.

I worry about asking for all the details so I can make sure she is included.

I worry that I have forgotten something or not asked something or forgotten to tell you something.

I worry when I need to trust someone else with her food needs.

I worry that I have not taught her enough so she can take care of her gluten free needs on her own and that she will do it.

I worry that with all the talk and issues about food my child could develop an eating disorder.

I worry that my child will choose to not comply with the diet when I am not around.

I worry about being a helicopter mom.

15. You don’t understand this disease and how serious it truly is

I don’t know who to give credit for, for this meme.

Many people think celiac and gluten intolerance is a joke. There are a lot of one liners in shows about gluten free and commercials that make fun of it. People jumping on the band wagon because it is “popular” and advertising that “Our helmets are 100% gluten free” Or “Our zipline is gluten free” or some other ridiculous thing.

To those of you who think this disease is a joke or not real, please put yourself in my shoes. Our family lives with it everyday! We have to think about food far more often than we ever wanted to.

16. You don’t understand that we feel like social outcasts

Every party and every event with food makes you feel like you don’t belong. Please talk to me. Ask me what my child can eat. Sometimes, especially if my child is young or on the shy side they either don’t know what they can and can’t have or are too afraid to tell you. My child worries about hurting your feelings or putting you out. Please don’t assume that you can figure it out without talking to the people that deal with this everyday! If you don’t eat what you buy for someone who is gluten free, how do you know it is any good?! There may be issues with the product, a controversy (i.e. Cheerio’s) or it just tastes like cardboard that your dog wouldn’t even eat! There are a lot of really bad gluten free products. If you don’t talk to us before you buy something, chances are you will buy something that tastes awful, and we will likely throw it away when we get home. This disease can be isolating! Everything seems to have food involved. It’s especially hard when the event revolves around the food as the central point.

Give me time to prepare and plan for your event too.

I need to know what all the food will be and ingredients. Sometimes a change in one or two ingredients can make something gluten free. Like using a gf soy sauce or gf barbecue sauce or not putting croutons in the salad. I am not asking you to revolve your event around me and my child. I just need to know what to plan for so my child can be a part of it. I am more than happy to send similar items so my child doesn’t feel left out and like they are sticking out like a sore thumb. I know it is a pain and I am so sorry, but please continue including my child and let me help with the food for her.

Please talk to me about more than just food, celiac, gluten intolerance or other medical issues. We need to talk about more than this part of our lives.

17. You don’t understand how much work it is for me, for my child to be involved in everything

Oh, how we miss the day when our child got an invitation and we could just buy a present and send them on their way! When your child has celiac:

You have to call the host and find out ALL the details.

You have to plan ahead.

You have to remember to ask if they are serving any other food (or playing games that involve food or treats)

You have to ask if you can you send something for your gf child? “Can I send a cupcake, too?”

You have to prep your child about the food and what they can or can’t have.

You have to reassure them that it is okay.

Reassure them that the parent is okay they are bringing some other food (we try to match what is being served at the party).

Reassure them that it isn’t a big deal.

Reassure them that everyone has something they have to deal with.

Before the party I have to remember to make time to make cupcakes and frost them. (Everyone in the family enjoys this part because everyone benefits from an extra treat being made.)

Take everything to the party (Sometimes I have to bring a pizza later so it isn’t cold when they are going to eat.)

Feel bad that you may have put extra strain on a mom that is already stressed with throwing a birthday party.

Camp is even worse! If there are several groups camping together (like our church does), then each group takes a turn making and planning a meal. I have to find the person in charge of each group and make arrangements with each one for each meal. Then I worry while they are gone about cross-contamination, did they get their gf food, did other people eat the gf food and did they get enough, did I send enough, will it go bad before camp is over (most gf food doesn’t have a lot of preservatives) and so much more! 3 more years and all of my girls will be done going to camp! Looking forward to that!

I so appreciate all the mom’s and leaders that have worked with me, listened to me and helped me to help my kids have more “normal” experiences!

Please, don’t get me wrong on this. While it is hard, a lot of work and sometimes overwhelming, I really am happy to do this for my child.

18. You don’t understand why my child cries when donuts and cupcakes have been brought in several times for the last month and they can’t have any and everyone else is enjoying it so much.

Again, it is about being left out, not included, and they know what they are missing. It is hard to see all your friends enjoying a treat and you can’t have one! We homeschool and so my girls didn’t have as much of this, but it happens at church and at gymnastics and soccer and almost everywhere. I try to always have something with me (if I know there are going to be treats) or we figure out a treat on the way home. I’ve seen adults. . . oh wait, that might have been me. . . who also cry and have a hard time because it would be nice to have a treat with everyone else. It takes constant discipline to say no to things you can’t have and it can be overwhelming at times! (I feel stupid when this happens because usually it isn’t even because I wanted it. If an adult feels this way, how much more difficult must it be for a child?!)

19. You don’t understand how hard it is to go to an event where people are milling around eating and snacking and there’s nothing you can eat. Most people are more relaxed having some food around while they talk or watch movies.

It isn’t enough to be told, “There should be a few things you can eat.” That doesn’t help me know what to send or how safe anything is going to be. I still need to read the ingredients (of everything). Some nuts and chips also contain gluten. I have to worry about people touching gluten and then touching other things. If there are things to dip and people are dipping gluten into the dip or chocolate or whatever, my child can’t have anything. They can’t have what was being dipped in or the things being dipped because everyone is using their fingers and there is so much cross contact that nothing is safe! You are happily enjoying the snacks and the atmosphere and I am worrying about the gluten in the food and the surroundings from people touching everything with gluten on their hands. My child isn’t going to be as relaxed as the other kids. It can also be hard to bring something for yourself, when everyone else is sharing. Other kids and adults often don’t understand that sharing means there’s nothing left for you and your gluten covered hand will contaminate my snack. (You can’t see the protein on your hands.)

My teen going to an event like this would have a difficult time.

Licorice is even a problem and teens often have a hard time sticking up for themselves. Friends often want them to have just one or a little won’t hurt you. Don’t get me started on kissing! I’ve discussed that in Kissing Gluten Goodbye.

For gluten free young kids nursery classes and day cares are especially hard! You also have issues with Playdough and other art supplies that contain gluten.

In the end, there is no safe-zone, no place where your kids are safe, no place where they aren’t isolated in some way or become a spectacle because you and they are constantly having to worry about exposure to gluten. In the end, only “home” is safe, and that too isolates your kids from friends and social experiences.

21. You don’t understand that it can be more difficult for my child to get over a cold, flu or other illness that is going around and they are more likely to get it.

I get so nervous when we are at church or gymnastics and the kids are coughing and wiping their runny noses. My child gets sick easily and it is harder for them to get better.

I had to really control myself when I had been keeping my daughter home from church because she kept coughing and had a runny nose. I thought it was probably allergies but wasn’t sure so I kept my child home to be safe (she tended to get whatever was going around and twice as bad as everyone else) and as a courtesy to you. Our first Sunday back to church I overheard a mother talking about how she had just dropped her kid off to nursery and how she hoped he had been on antibiotics long enough to not be contagious. GRRRRRRR!

Or how about the time my daughter had to compete in a big competition with a cold because her teammate’s mother didn’t want her daughter to miss practice. My daughter had been coming home stressed and worried because this girl coughed without covering her mouth! I was so angry!

Her colds tend to last longer and hit harder.

22. You don’t understand how sneaky gluten is.

Did you know soy sauce is typically made from wheat mash? Did you know some things that you would think are gluten free like corn bread or Rice Krispies are NOT gluten free! Oats and oat flour are not safe unless they are certified gluten free. There are more names for gluten ingredients than just wheat, rye, and barley.

If you have made corn bread you may realize that it requires more than corn mean or corn flour in the recipe. It isn’t made from straight corn.

Soy Sauce: besides often being made from wheat mash some contain barley. Because barley is NOT a top 10 allergen, it does not have to appear in the ingredients list. The last time I checked, Western Families Soy Sauce contained barley but it was not in the ingredient list. We had a lot of people in our support group getting sick from it and several (including me) called and asked if there were any gluten ingredients not on the label.

Rice Krispies: contain malt. Malt is almost always made from barley! Malt is the most popular place that gluten hides!

Oats and oat flour: Not safe unless it is certified gluten free! Cheerio’s and/or any other cereal or product that uses mechanical sorting instead of certified gluten free oats is NOT considered safe at this time for those who medically need to be gluten free.

Other names of gluten: The following are derivatives of wheat; durum, spelt, emmer, farina, farro, and einkorn. As well as triticale, which is a cross-breed of wheat and rye.

23. I worry about how medications and vaccines will affect my child.

Many medications still use fillers made from gluten.

Without getting into all the vaccine issues. It is very stressful to me. We still do many of them but are very leery especially since we had a nurse give us information when our daughter was hospitalized after having the flu shot. We don’t know enough about what is in them and how taxing they can be on an already stressed immune system.

My youngest daughter just had the tetanus which also includes diphtheria and pertussis. Her arm has been swollen at the site of injection and swelled to cover an area about the size of a clementine. It is hot to the touch. She was really good about moving her arm around and trying to pump the medication away from the site of injection, but. . .

I worry about both doing it and not doing it. There are NO good answers!

Conclusion:

So, please understand why I ask so many questions, I want my kid to be involved and I want my kid to be healthy. I truly appreciate your help, but I have to ask! I know you have a lot on your plate, too; but please ask what my child can have and don’t assume. Please, know that none of this is easy for me and a lot of it is uncomfortable, but I have to make sure my child’s health is protected. There are a lot of good people that want to include my child and help them to be comfortable, thank you! Please remember, there is still a lot that you don’t see. We might look like we are doing well, and easily handling all the complexities of a gluten free life, but we are just doing a good job at the moment. Life is challenging and handling the complexities of “gluten free” is an ongoing battle for our family.

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You life and mothering sounds so familiar to my own. My daughter’s do not have Celia but they have EDS and several comorbids including serious allergies and intolerances.

I swear with a few substitutions I could have written this myself. The doctors, the kids, the parents and even family do not understand how truly difficult it is. And the cross contamination from touch. Most people have no clue or just don’t care.

Thank you so much for writing this. I would love to share it with some of our EDS moms.